Anyone else with endometriosis?

Oh my goodness - what a nightmare for you to go through (and don't apologise about rambling - I like rambling :winkwink:). You must be pulling your hair out - and must have lost a lot of trust in drs. Your cycle is not normal (you know that) - how patronising of them to say it is.

What I don't understand is why nobody takes these symptoms seriously. At the time of my hospitalisation, I was just pleased to be out of pain and released from hospital but in hindsight it is really terrible to not pursue and find a diagnosis. I guess it all comes down to cash - if my symptoms are gone then why bother investigating further - but I will be absolutely gutted if I find that I have had endo all this time, that my ovaries are a mess, and as a consequence I am infertile. I know that is probably going over the top but surely it would be better to diagnose early, manage a problem, and save money in the long run by leaving natural conception possible and not having to pay for IVF and other infertility treatments..... Argghhh! It makes me mad when I really think about it.

Did your gynae say anything about having a lap? Or a lap and dye? It sounds like you need that to see what is going on down there. My understanding is that the scan can show so much but the lap is needed to know for sure? Did they mention anything about that?

My situation is that I came off the pill in December - I was on it for years - since then my cycles have been irregular (55 days, 28, 88, and then this one looks like it might be about 27). I went to the drs in the middle of my 88 day cycle as we were TTC but weren't even able to do that. She took my bloods - they indicate PCOS (my LH level is nearly 4 times my FHS level) and so she sent me for a scan.

I had the scan and he found that my left ovary looks polycystic but was not enlarged (which they usually are if you have PCOS) and so he thought that was a bit odd. He also found an endometrial cyst on my right ovary (at least I think that is what it is - my GP said that the scanner had said it was thick walled which rules out the functional ones but I'm not sure whether she was guessing about it being endometrial or not as there are other types of thick walled cysts). Anyway, on getting the report from the scan, my GP referred me - and I'm just waiting on my appointment tomorrow.

In the meantime, I've had rubella and chlamydia tests and the OH has had a semen analysis. He should be getting his results this afternoon if he can get away from work to ring!

So I'm just hoping that I get some answers tomorrow and find out whether I have PCOS and/or endo. I have a feeling that I won't get too many answers tomorrow though - probably just have to have more tests..... Still at least I'm in the system and am being looked over now. I just hope my gynae knows what they are talking about!
 
I do have very little faith in Doctors. Which, as a student nurse, isn't the best ethos!!

I know what you mean, it would be much better to get a diagnoses.. But from working in the hospital I know that if Doctors can rid the symptoms they then don't seem so interested in finding a cause. Because of my past history of depression I even had a Dr sit me down while I was admitted and ask if I was making it up for attention, or if maybe the depression was causing the symptoms. Charming.

I hope you will get answers tomorrow. I don't know much about PCOS and endo, I guess it never occured to me that you could get both in one go!
Have they discussed Pelvic Inflammatory Disease? Or maybe an abscess on your ovary? we had a patient with an abscess and it turned out to just be fluid which was left over from having a past infection. Strong anti biotics and such and then she was fine, in theory her periods are regulated now, but obviously that's just one case and I have no idea what you've got! I don't know if abscesses are thick walled :wacko:
Hopefully your gynae does know what they're talking about... If you're not sure about what their saying make sure you're talking to either the consultant or registrar, not a senior house officer.

I've got a registrar, and she never mentioned a laporoscopy or anything.. Maybe I'll suggest it at the next appointment. I'm refusing to be fobbed off with "this is totally normal" now, because it just isn't fair!
 
hey ladies! new to this thread. I also have severe endo. YUCK!!! I've read several post and I agree that this is not discussed among women enough. Mine was diagnosed in Feb 2009. I got off bcp in Jan 2008. I really didn't have pain but just bleeding and spotting all the time. My docs kept putting off like it was normal bc I had just stop bcp and my hormones were out of whack. well in Oct 2008 I started having pain in my lower right abdomin. In Dec it was so severe I was doubled over in pain throwing up and about passed out. My GP scheduled a CT scan which showed a cyst on my right ovary. Then my GYN gave me pain killers to help while we watch the cysyt to see if it was growing or would go away. It grew very quickly. It was over 7cm when I went back in Jan for u/s. He scheduled surgery to remove the cyst, which went fine by lapro and it was not cancerous. BUT, he found endo and said it was one of the worst he had seen and very shocked I had not been in more pain. Only from the cyst. The recovery took me two weeks. I was so tired and weak all the time, but the worst was the pain from the air they pump in you to do the lapro and coming off the anes. He said if we wanted a baby we needed to do it soon after the surgery. My cycles were haywire but I was ovulating. We were pregnant two months later. Pregnancy and breastfeeding for a year kept my cycles away so I didn't notice any effects of the endo until we started trying for #2 a few months after I quit nursing. The bleeding came back. We found out we were pregnant a month ago but it was ectopic so we had to terminate. My body is so out of whack! I also get really down about how my body just can't do. Being on bcp is the only thing that has help keep endo symptons away. But, I want another baby. This endo and the effects of having to take the methotrexate shot have really down a number on my body. I know I have really rambled. It's been great ready about your stories and knowing others feel as I do. I've been fortunate with a great doc. But, not always so. It took me years to find a doc who was kind and would listen and knew what he was doing. I'm so sorry you guys have had bad experiences. Stay on them or keep searching for a new doc that will listen. I've dealt with that too.
everdreaming and struth- any diagnoses yet?

Note of encouragement: You can get pregnant with endo, it's just more challenging. So worth it. My baby girl is my sunshine! I love being her mommy and getting to stay home with her.
 
Hey runningmom - thanks for sharing your story. I'm so sorry to hear about your loss - that must have been so difficult. And I understand how you feel about your body - I went through a massive 'why me?' phase when I hated my body for not working right.

You asked about whether I have had any diagnoses yet? Well.......! I went for my appointment with the gynae and he had called in sick and so my appointment was cancelled. I was sent away saying that the earliest they could rebook me for was the 2nd August. I was livid and so upset.

Anyway, a couple of days later AF was due - when she didn't arrive AND my temps shot up I took a test and got my bfp! I spoke to my dr and he has advised to still go to see the gynae (which I managed to rearrange for 20th July at a different hospital) as it will do no harm. I was concerned about the impact on my endometrioma on the pregnancy so he said I was best to go and chat it over with the gynae. So I'm off there on the 20th to see what he says. I just hope that everything is okay with this pregnancy...
 
OMG struth! I would have been livid as well. I can't believe they wouldn't try to get you in earlier. Glad you are getting in somewhere on the 20th. Best wishes!
Congrats on BFP!! That is so exciting. I'm so happy for you. Is this your first? THere is nothing in the whole world like it.
I was told my endo would subside when I got pregnant and I didn't have any problems. I hope all is well with you and baby too!
Thanks for reading my long story.
 
runningmom - congrats on your LO! I was just diagnosed with severe endo, but it's stories like yours that help me stay positive! I'm currently WTT because the doctor put me on Zoladex to try and reduce my endo and stop the cysts from growing back, but I'm hoping to TTC in a few months depending on how things go (fingers crossed). Really sorry about your ectopic, hope you recover very soon...

struth - congrats on your BFP, great news!!
 
Thought I would post :) I'm 22, and I found out I had endo when I was 17 after having a diagnostic lap due to severe cramping (reduces me to fainting etc). It's on my fallopian tubes, and I was told that it would either get 100% worse after having children, or being 100% better. What a chance to take eh? :p

I was put on BC with no breaks at all apart from once a year, but I recently came off of them. Mostly because I wanted to become regular and see how I would cope, and I've actually been not to bad so far. Hopefully it will stay that way.
 
Goldfish. We will be TTC around the same time, if everything goes OK from this recovery. Thanks! Good luck! Crossing my fingers for you and praying. (baby dust)
Been having complications from shot for ectopic so I'm headed to doc again tomorrow.
Autaven. Hope all stays well for you.
 
Struth - Congratulations!!! I'm so pleased for you :) I hope everything is going well and you manage to get an appt with gynae - that's ridiculous that they cancellled like that!!


Autoaven - I hope things are working out being off BCP, I can't imagine coming off it after being on it for a long time - going on it for one month was bad enough!


runningmom - i hope the after effects are wearing off and your dr was able to help you!
 

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